Help! Are you >/= 5yr survivor IDC 1.2mm (<4mm) & no chemo?

Flautadulce

Hello!

In May/June 2016 I was diagnosed with Stage 1a DCIS and IDC 1.2mm, Grade 3, 0 nodes, 0 Lymph/vasculature, ER-neg PR-neg HER2neu-neg (TNBC). My surgeon and medical oncologist said mastectomy was all that was needed. No chemo recommended because of the size of the tumor. She's never seen a tumor that small met. How is it that they know a 'small tumor' has not let a cell or two slip away? I feel like a sitting duck waiting for the metastasis to happen. I have read journal articles from Italy and China that have done retrospective studies showing that they should be looking more at Grade than they have been. Up until now, they are using the size of the tumor and lymph node involvement to make the call.

I went to MD Anderson for a second opinion this month and the doctor there (26 years in breast cancer alone) said that my doctors were treating me properly. He said anyone who would give me chemo would be doing so for his/her own financial benefit! I queried Johns Hopkins and the doctor that responded said that there just aren't enough women with that small of an IDC tumor with TNBC to be able to make a recommendation for chemo (First do no harm.)

Is there anyone out there who has survived more than 5 years with TNBC IDC without any other treatment except surgery? I feel like a sitting duck, waiting (while seeing med onco every 3 months).

TIA.

Vicky, age 63, no family history of BC, pending genetics tests

Tomboy

I would rejoice if I were you, that chemo is NOT recommended for you, by TWO great institutions. Chemo does many harms while it is doing it's job. That can last for years. IF it comes back, then- - that would be an option. You must have lucky stars. I DO hope more women will come and see your post & respond.

Moderators

We second what Tomboy said. If very two very good physicians have confirmed that chemotherapy is not indicated for you, that is great. If you still do not feel comfortable, you can get another, third opinion, but more likely it is about trying to pull back and feel relieved (much easier said than done!).

Flautadulce

Thanks for your perspective, TomBoy. I find it hard to rejoice having been diagnosed with an aggressive cancer, but I do praise God that everyone seems to think that chemo is not needed. It is obvious from reading the journals, though, that the scientific community is still figuring out this disease that doesn't respond to estrogen-blockers like Tamoxifin or HER2neu blockers like Herceptin.

Probably what is causing my angst is something that I did not include in my initial post. I felt a lump in January. I scheduled a mammo in early March, without telling anyone I had a lump. I knew I had dense breasts and I was concerned that this lump had been there since last year potentially. My suspicions were confirmed: My mammo was pronounced "normal/unchanged".

I went to my APRN who I have a lot of trust in. She said, "Well your mammogram looked good." When I said, "Well, there is a problem. I have a palpable lump", she did not want me to tell her which breast or where. She could not feel it (I am thin and small busted. You can easily feel every rib.) She asked me to show her where it was. She said she felt 'fullness' but not a real lump, but agreed to send me for a diagnostic mammo and ultrasound. 2 more weeks went by and the diagnostic mammo was considered 'normal' and I almost didn't get the ultrasound, but I asked for it since I was already there. The US tech was having some type of trouble, but she persisted for several minutes. Then she said she'd go show the doctor. He came in and spent more than half-an-hour doing ultrasound on me. He harrumphed and sighed again and again. He finally said that he could feel what I was feeling but he could only get a view of it from one angle and that is not enough for a needle biopsy. (They need multiple coordinates to do that.) He said he'd like to reschedule me in 3 months, but that he'd talk to his colleagues about the US and give me a call.

The next week when he called he said they agreed with the wait and see plan. He said to 'watch it'. I asked him to define what that meant. He said if you see x,y or z. One of the signs was a tethered nipple. I asked him to define that and when he did I told him I thought I already had that. Then, I'm off to see the surgeon, but the best surgeon is on vacation and it takes a month to get in to see him. Then it's another 3 weeks to get the open surgical biopsy. He didn't get clear margins (microscopic) and there was not enough of the IDC for them to test the HER2neu. The final diagnosis of TNBC did not come until mid-June after the mastectomy, a full 6 months from the first time I felt the lump (because of pain, BTW...which only 10 % of cancer causes pain.)

It felt like if I hadn't been persistent, the TNBC that was1.2 mm IDC could have been centimeters big (according to my oncologist who said it was a very aggressive cancer.) In fact, she said that had I been able to get in sooner, we may have caught it before it became IDC. So, yes, I feel blessed to have caught it before it reached the lymph system or metastasized. But the difference that I have learned about metastatic TCBN, is that it is not curable and it is only about 9 months from the time you find a met to the end. I have read that in more than one research paper. TNBC scares me. I would just like to find someone else who had IDC TNBC and did not have chemo and survived without mets.

Vicky

Moderators

Flaut,

We can certainly understand your concerns and your desire to connect with someone with a similar diagnosis. We hope our bump in this thread helps someone see your post and weigh in with their thoughts/experiences. Please let us know if there's more we can do to help!

--The Mods

missrachel1

Hello,

I just reached my 5 year mark. I had .5mm mass on ultrasound. After biopsy and at the time of lumpectomy I only had < .1mm left. Most was probably taken at the time of the needle core biopsy. It was mixed with DCIS as well.

I had no chemo. I did have radiation because I did not have a mastectomy.

I changed my lifestyle, ate a very clean, alkaline diet, exercised everyday, upped my vitamin D levels which were low at time of diagnosis and never felt or looked better in my life

Flautadulce

Dear MissRachel1,

Thanks for the encouragement you have given me. I've learned that TNBC is only 15-20% of all breast cancers and that having WAY less than 1 cm is even more rare. It is helpful to me to know that you have made it 5 years. From what I've read, you're out of the woods now. ER+ cancers can come back any time but once we TNBC survivors have made it 3 years, the odds are very low that it will recur. At least that is what I've read!

God bless you richly,

Vicky

missrachel1

Yes, 3 and 5 years are big milestones. You can't imagine now, but life will get back to normal. This is just a shake up. Meditation also helped along with EFT (emotional freedom technique) for stress. Wishing you the best, please do not hesitate to contact me if you need support or have questions.